How our lives have been touched by preeclampsia, cerebral palsy, epilepsy, feeding tubes, failure to thrive and whatever else comes our way

Saturday, March 5, 2011

Gabe Update #7

Gabe had another pretty good day today. He ate a little better than yesterday from a bottle and breastfed for about 10 minutes. He actually took a whole ounce by bottle so that was nothing short of miraculous! Yeah, it took him 30 minutes but he did it and that is what counts. So the whole heart issue- the PFO is a type of ASD so his ASD is his PFO. It is not too bad and not really a big deal. He has something called left to right shunting and I'm not really understanding all of that but apparently it is OK at this stage in the game. He also has some pulmonary artery stenosis but again that doesn't seem to be worrying the doctors and therefore it is not worrying me. His blood pressure is still elevated and they are now considering starting him on meds for it. They would use captopril. The weird thing is that captopril is an ACE inhibitor (type of b/p med). My b/p responds best to an ACE inhibitor but I was told not to take it while breastfeeding. It is weird that they don't want me to take it because it would be passed on to him yet he can take the ACE himself and that is OK. Good thing I'm not a doctor- I don't have to understand that one. He is also having some heart arrythmias. He was having those in utero too. They are just watching it for now. Everything else seems to be going well with him. My blood pressure has been much better today. I'm hoping things are finally moving in the right direction as far as that is concerned. I know some of it is also stress but honestly I think that given the situation I am taking all things well. I know Gabe will be fine. He just needs to grow and mature. It would be so different if he were in the NICU because he was sick, but he's not and that makes it easier for me. Don't get me wrong, I am ready for him to be home, but not a moment before he is ready. And he will be ready, in his own time. I am going to head up tp see him early tomorrow because my great grandmother's 97th birthday party is tomorrow and I need to be back in time to attend it. The girls continue to do well but are really tired of not being able to see their brother. I sat down with Carly and we talked about how that yes, Gabe is in the hospital but that when he comes home he will be healthy. I do not want her to think that because he is int he hospital that when he comes home it will be like it has been with Anna. She says she understands that he was just born early and needs some time. I swear that child is an old soul and wise beyond her years. She has been so helpful with Anna lately and Lord knows we have needed it because Anna has been crazy! My bed is calling my name so I must go. It hates to be ignored...

1 comment:

I breastfeed my younger son while on an ACE inhibitor. I did not do so with my older son for the simple reason of I was planning on another pregnancy in less than 2 years. ACE inhibitors are NOT compatible with pregnancy, but are with breastfeeding (it has to do with the fact that ACE inhibotors are cleared by the kidneys, which really do not function fully until birth).

The Cuties

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this....When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.